What is the Color of Shame? 🩸

Why I write publicly about my endometriosis and other "impolite" topics.

Earlier this month I made a joke on social media wishing “a happy Endometriosis Awareness Month to those who celebrate.” I’d landed on a silly approach after first considering a more serious one: I was going to point out that when I was first diagnosed via laparoscopy at 18 in 1984, I was told that endometriosis was insufficiently understood, and now 37 years later, that largely remains the case. (For the uninitiated: a painful condition affecting one in ten women globally, endometriosis is an autoimmune disorder in which uterine lining appears in other spots around the body, then cramps and bleeds. Zero stars. Do not recommend.)

I started my post with a joke to deflect, and backhandedly comment on, the embarrassment I’ve been taught to feel about addressing a gynecological matter publicly. But a long history of shaming and silencing women about our experiences has contributed to a lack of vital attention to conditions that affect mostly women, by the medical field, the media, insurance companies, employers, and others. It’s also made it awkward for many of us to speak up and self-advocate when talking with doctors—especially male doctors—who don’t know enough about our conditions, and dismiss our complaints.

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There’s a kind of paternalism in medicine that, historically, has had a devastating impact on many women, including me. Male doctors have doubted the severity of assorted ailments and chronic conditions I live with, from the time I was a teenager, until even very recently. Women doctors aren’t immune to this; being educated and working within a male-dominated field can lead them to internalize a lot of the thinking and attitudes in which they’re immersed.

Part of my problem is that, like many women, I “present well” at doctors’ appointments. I’m polite and charming and upbeat, even when I’m in great pain, leading doctors to assume I’m a hypochondriac—until they open me up and find adhesions throughout my body cavity. It’s a deeply ingrained, unconscious way of behaving, rooted in a desire for my doctors to like me, and not consider me difficult, which has been shown to sometimes lead to mistreatment. (Not being believed, and being considered “difficult” by doctors, is even more of a problem for black women and other women of color.)

Presenting well makes me an unreliable narrator when I insist—as I did at my last appointment with my kind but insufficiently-informed male general practitioner—that I still occasionally suffer from endometriosis cramping, despite having undergone a hysterectomy almost a dozen years ago, and having completed menopause, according to my blood work.

“That’s impossible,” he said. “Menopause should have put an end to your endometriosis.” Shoulda, would, coulda, Doc. New research indicates it’s possible for post-menopausal women with endometriosis, like me, to continue experiencing symptoms. He also insisted I couldn’t possibly still experience hot flashes post-menopause, but I do, roughly 20 times a day. (My octogenarian mom still has them, too.)

 Long before my current GP, when I was 18, there was one male specialist who told me my chronic pelvic pain was “just what it’s like to be a woman,” and later, in my forties, another who refused to tell me the name of another similar condition he was diagnosing me with, adenomyosis, because I “didn’t need to know.” He referred to it instead using the dumbed-down description of “spongy uterus.”

In the face of this kind of dismissal, writing and speaking in polite company about such “impolite” subjects is a political act. I want to normalize women not feeling shy or ashamed about our experiences, because I want the way we’re treated to change. And I want to make enough noise for the medical field to take conditions that mostly affect women more seriously—to fund more research, so that we can find more effective treatments.

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To some degree, I also write about my gynecological issues for the same reason I write about aspects of my life that have made me feel self-conscious, or embarrassed, or like a weirdo—like my deep aversion to motherhood—because every time I do, women reach out to me to let me know that they are like me; that I’m not alone.

Currently I’m at work on a memoir in essays about being a late-blooming Gen X woman who has felt lost and out of step with my peers for most of my life. Just posting the Publishers Marketplace announcement about my book contract on social media brought many women in my age group out of the woodwork to comment that they wholeheartedly related. They felt seen, and then I felt seen by their acknowledgement of that.

Maybe having experiences that depart from long-standing dominant narratives in a patriarchal culture doesn’t mean we’re weird; maybe it means there are more narratives than we’ve regularly heard, or been encouraged to share.

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Next month, I’ll probably post the same dumb joke about Adenomyosis Awareness Month. Although, of course there’s nothing funny about adenomyosis, a painful condition similar to endometriosis in which endometrial tissue, programmed to shed each month, corrupts other layers of the uterus, leading to erratic, powerful cramping and heavy bleeding. Even less is known about this affliction, which in most cases is only relieved by hysterectomy.

Before I had my uterus removed a month before my 44th birthday, I spent half of each month doubled over in agony. Three to four days each cycle my cramps would be especially painful, and I could barely function. Nonetheless, I had to fight with my insurance company to pay for my hysterectomy. Fortunately, my doctor went to bat for me after they initially rejected his request.

A few years ago, when I wrote about my condition—and my frustrating path to diagnosis and operation—once again, many women reached out to me to let me know they’d had similar experiences, and thanked me for going public with mine. But when I told a male doctor friend about the essay, he replied, “Is this one of those pieces that’s so personal, it’s going to make me uncomfortable to read it?”

Any time I encounter that kind of reaction, I become ever more committed to writing and speaking about these things. Does it actually make a difference? I’m not sure. Either way, I think it’s time to prioritize women’s physical suffering over other people’s discomfort hearing about it.

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PS The YouTube link at the top features “My Red Shame,” a song by 90s riot grrrl duo Heavens to Betsy. The lyrics:

What is the color
The color of shame
Is it red
Is it blood blood red
Does it creep out
From my two legs
Up to my face
If you notice the stain
Never wear white
Or your shame will creep thru
Never wear white
Or your shame will creep right thru
Is this the rag
You use to humiliate me
Cuz i was born
I was born a girl
Is this the rag
You use to humiliate me
Cuz i was born
I was born to bleed
Never wear white
Or your shame will creep thru
Never wear white
Or your shame will creep right thru
What is the color
The color of shame
I know its red
I know its blood blood red
Is this the period
Too long
Too strange
For you to understand
So you make me hide
The truth from you
So you make me hide
My red self from you